Friday, December 8, 2017

Changes in Brain Chemistry After Exercise

ME Association:

We recently reported the results of research from Professor James
Baraniuk and Assistant Professor Narayan Shivapurkar of Georgetown
University in America.

The research demonstrated differences in the levels of small
molecules, called micro-RNAs, in the brains of people with chronic
fatigue syndrome (CFS) and Gulf War Illness (GWI), after exercise.

We are now able to provide a summary review of this important study,
to be read online or as a download.

#MECFS #Research #miRNA #PEM #Exercise

Tuesday, September 26, 2017

Through the Shadowlands available in audio

Through the Shadowlands available in audio
View this email in your browser

Dear Karen,

The audio version of my book, I knew, would be important. So many of my patient friends can't read an entire physical book, but they can listen. But I ran into trouble getting the audio version produced. So I decided to do it myself, with help from a recording engineer — and a team of volunteers from around the world, organized through #MEAction. I needed to make sure that I had read the text completely accurately, and the team carefully listened to the entire book, catching any problems. I'm enormously proud of the final product, and I'm so glad finally to be able to share the book with everyone in this community.


Julie Rehmeyer
Check Out Julie's Audiobook
Editor's Note: Interested in becoming a volunteer with #MEAction? Our global impact is only possible through your participation. To get involved please visit:

Tuesday, September 19, 2017

Changing Hearts and Minds

Changing Hearts and Minds: A Review of Unrest

Five years in the making, the award winning film Unrest whichJen Brea
created to portray the real costs and struggles ME/CFS patients face,
is finally here. With showtimes starting next week, now is the time to
see and spread the news regarding this raw, poignant and powerful look
at ME/CFS.

Check out a review of Unrest and find out how you can see it in

Things to Do When You’re Mostly Housebound

"Things to Do When You're Mostly Housebound

For those who are mostly housebound, living well can be a challenge."

Toni Bernhard J.D.

(August 09, 2017)

From "Sick" to "Disabled"

From "sick" to "disabled": my own journey

Posted on June 13, 2017
Author Catherine Hale

Catherine Hale looks back at how half a lifetime of chronic illness
slowly changed her understanding of "disability".


She has a chronic illness [ME].

She discusses wondering how the "social model of disability" related
to her. She discusses how her mindset has changed somewhat over the

"How much was my own recovery-obsessed mindset holding me back from
demanding that society accept and include me just as I am?"
* * *
I can tell you that it took a long time for me to accept that I was disabled.  Too many outside forces insisting that if I just tried harder, looked again for a doctor with the right magic pills, I'd be well again.  As if admitting that I'm disabled was somehow a failure instead of accepting reality.
I finally was sent to a consulting doctor who made it clear that the years of bad doctoring, ignoring physical symptoms and treating me for psych problems that I didn't have, refusing to give me either pain pills or sleeping pills so that I could get more than an hour or two of sleep before the pain woke me up, at best I might work half-time, but the physical damage from that medical neglect was permanent and too severe to ever return to full-time work.  That was what shook me up enough to recognize I was permanently disabled.

Coins for a Cure

From: Open Medicine Foundation

Coins For A Cure was inspired by one patient's hope for a cure. Eimear
Forde's family has been going door-to-door and all around her town in
Ireland collecting donations to support OMF"s research. Together with
her children, they share the message of hope by using a basket of

One of Eimear's friends came to her home and emptied an entire piggy
bank full of coins into her collection bucket. It was a lot of coins
and totaled up to 50 Euros. This inspired Eimear and her family to
start collecting coins from family, friends, neighbors and local
businesses. In their first "Coins For A Cure" collection, Eimear
donated over $600 USD. Eimear said, "Some of the donations are small
but it all adds up!! We have to find some solutions to this awful
disease, I want to do all I can to help."

We invite you to join Eimear and ask your family and friends to donate
their spare change and to empty their piggy banks. Invite local
businesses to put a collection jar by their registers. You can get
your company, group, church or organization involved too. Let's make
this an international Team OMF collaborative effort. Join the action
and get your community involved.

Millions of patients around the world are in need of a treatment and a
cure. Your coins are truly giving hope to patients and their families,
just like Eimear's. Be a part of Coins For A Cure and help accelerate
research to help millions of patients.

Donate Now

Please share our Coins For A Cure campaign with your friends.
Working together, we will find answers!

Saturday, September 9, 2017

Tuesday, July 18, 2017

National Disability Voter Registration Week: July 17-21

No matter whether you have private insurance, Medicare or Medicaid, they're talking about changes that will affect your healthcare.  Make sure you're registered now, and make sure you vote next November.

Graphic of Register! Educate! Vote! Use Your Power! Rev Up for California! Make the Disability Vote Count.

Support National Disability
Voter Registration Week

July 17-21, 2017

In collaboration with the American Association of People with Disabilities' Rev Up campaign, the Disability Organizing Network supports National Disability Voter Registration Week. Building the disability vote is essential. Together we can make a difference by continue to organize and educate people with disabilities about the importance of voting.
There are a variety of ways to participate in National Disability Voter Registration Week.
Are you registered to vote? Did you know that California Residences can register to vote online? Visit the California Secretary of State website to register and share the link with your friends, colleagues and network:
Use your social media accounts to post and show your support by sharing a Rev Up graphics:
Sign onto the Rev Up Support Statement and ask others to do the same:
Contact your local Independent Living Center Community Organizer to ask how you can get involved in the Systems Change work happening in your community:

Tuesday, June 27, 2017

Disabled writers

A friend who works with the disabled passes along this link:
What an excellent idea! Writers with a disability have created a brand-new website, Disabled Writers. The aim of the site is to enable editors to connect with disabled writers (and vice versa).
Thanks, Dan!

Thursday, June 15, 2017

Carers Week

It's Carers Week, and we're supposed to acknowledge those who have cared for us during our illness.
I would like to acknowledge my carer: Me.
My ex would leave me alone for 18 hours at a time so he wouldn't have to provide care – no matter how many times I reminded him, he wouldn't even leave a sandwich and a pitcher of water next to the bed for me (and then he wonders why he's an ex!). When I was deathly ill, organs beginning to shut down, I wanted to go home to die, and my mother reminded me that growing up I had been told that I was out as soon as I graduated; she wasn't going to take care of me, either, even though I didn't really need nursing, I just needed someone to cook meals (which she was already doing for herself and Dad).
I tried hiring people, but they only wanted to do what they wanted to do; a man was happy to drive me wherever I wanted to go, but cooking and cleaning and caregiving were "women's work" and he was not willing to do that. A woman who claimed that she had been paid caregiver for a woman with Alzheimer's had a very different idea of what the job entailed than I did; it turned out that she was merely the daytime babysitter while the family went to work – the patient's daughter did all the cooking and cleaning, so all she was required to do was make sure the patient didn't burn down the house and periodically coax the patient to go potty. She thought it was outrageous that I expected her to make meals for me and claimed not to know how to load a dishwasher, even after I'd showed her how, much less doing any of the other chores. She thought the job was merely sitting on the couch reading a book or watching TV, not actual work.
I wrote a blog post years ago pointing out that the books about living with CFS are written by those who have family caring for them, not those who are using every ounce of energy to buy and prepare food, and thus give a very different impression of how tough it is.
The story would sound much more heartbreaking with tales of "I haven't eaten in a week because I cannot get out of bed to get to the kitchen" than it does with "I wasn't feeling well, so my daughter made me a lovely homemade chicken soup." Or "I don't recall the last time I bathed because I don't have the energy to get to the bathroom" versus "my husband drew my bath, carried me to the tub, gently washed me, and carried me back to bed."
When I'm up to it, I will hardboil a dozen eggs, and I keep cooked shrimp in the freezer in single-serve packets, only takes a couple minutes to pull out two eggs and a baggie of shrimp for a high-protein lunch.
The problem is the days that I can't get out of bed without falling to the floor. Eventually I realized that I could stack several cases of bottled water and nutrition shakes next to the bed, and keep things like PopTarts and cereal bars on the bedside table for the days that I couldn't make it to the kitchen. Or make PBJ sandwiches.
Then someone mentioned taking her lunch to work in a mini-crockpot; takes 45 minutes to an hour to heat leftovers (or a can of something). For $20 I got one to keep next to the bed with a variety of canned goods, so now I can eat soup, stew, vegetables, etc., not just cereal bars, when I'm not able to get to the kitchen. A can of chicken and a can of carrots, plus the liquid from each, and part of a bottled water, and I have chicken soup. If I line the container with foil, I don't have to use my precious bottled water to wash it between meals.
I have experimented with other options, some more successful than others. I can put eggs in and leave them for a couple hours to get hardboiled (because the water never gets to boiling, so you have to cook them longer), but trying to make an omelette was not as successful. Meat needs to be pre-cooked, since this mini-crockpot is intended to reheat, not cook; but you can use canned chicken or thick-sliced roast beef from the deli counter.
If you are making something really dense like couscous, heat the water first, or else the center will be cold. Instant rice works better than regular.
Last week I attempted casserole. Heat the water, then put in the dry noodles, canned tuna, and veggies for a few minutes until the noodles were done. Not bad.
Of course, all my cooking creativity doesn't solve the problem of getting the house cleaned or the trash taken out, but it solves the immediate problem of getting enough nutrition to stay alive. I can take out the trash on a good day.